A4.17 Concerns raised by families via interviews

Quotes and commentary from the parent /carer interviews have
been incorporated into appropriate sections throughout the rest of
the results section. Feedback which did not easily fit within other
sections is included here.

Summary of additional concerns raised by
families

1. Lack of emotional support to deal with a mental health
diagnosis

2. Barriers to communication with professionals add to the
stress for families

3. Need for written information about processes and provision
needs to be available to support families' understanding

4. A focus on one aspect of a young person's difficulties can
create further problems in meeting their needs

5. The lack of therapy, education and other interventions

Many of the parents interviewed reported being "
traumatised" by their experiences and would 'well up' as
they were speaking. Some were obviously overwhelmed by the various
processes they had to engage in. Questions about their involvement
in planning meetings for instance received responses such as "
what can I do about it?" and "
I am not sure what the plan is now".

Clinicians reported that families they had worked with had tried
lots of ways of expressing their views but still felt their views
have not been taken into account. They described parents struggling
with the difficult adjustment to being parents of an adult when
some decisions, including about medication, may ultimately no
longer be up to them. Some parents found multiagency meetings and
mental health tribunals distressing, even when they agreed with
decisions being made, due to having to talk about the range and
extent of their child's difficulties in such big meetings.

A4.17.1 Managing the implications of diagnosis

Parents described a feeling of
"being abandoned to deal with the feelings" that came from
their child being diagnosed with mental ill health. No parent
identified being offered specific support to deal with the
emotional impact (although two sought out counselling for
themselves).

There was little guidance given as how to behave or discuss the
situation as a family and with the young person themselves. Parents
described "
feeling de-skilled" and being advised to
"treat her as if she had not been in hospital". Some
parents said they were left with more questions than answers
. "How then were they to explain the last few weeks/months?
What were we supposed to answer when our child asked us what had
happened? How did we deal with the impact on their siblings? What
did we say about their brother and his behaviour?"

A4.17.2 Communication and involvement

Strong communication skills were identified by parents as one of
the key competencies for staff working with their children. Where
communication was poor and staff seemed unwilling to take on board
information about their young people, parents felt extremely
anxious and questioned the appropriateness of the setting. Not
understanding what was going on themselves and struggling to get
information was also a common problem for all the parents
interviewed.

One parent described repeated attempts to speak with the
consultant about his child, "
we felt the nurses were 'gate keeping' and were told 'he'll
call you' but he didn't. It was so frustrating; we just wanted the
chance to ask questions. Of course we came across as 'demanding',
but it really was like hitting your head against a brick wall at
times".

One parent felt very strongly that poor communication on the
part of the professionals had negatively affected her relationship
with her child,
"he has completely 'lost faith' in us finding him a better
place. How this makes us feel as parents is beyond description, and
despite us regularly complaining to those involved...no progress
has been made".

However, some parents reported positive and helpful
communication and emphasised "
how helpful this was, all my questions were answered honestly
and I was given proper information and kept up to date".

One parent referred to an incident where initially information
was withheld from her, she complained and received a written
explanation,
"it was really not a big issue but just don't hide things from
me". This situation led to a more positive relationship
between the parents and the professionals, conversations became
more open and continued to develop positively
"as if ground rules had been established".

Another parent referred to how good
"the
GP was at keeping
us informed. They had knowledge and understanding of autism
spectrum disorder and were very sensitive, helping us to make sense
of things".

A4.17.3 Lack of written information about
processes

Parents reported being given very little in writing about the
processes they and their young people were going through. Written
information of itself couldn't replace information provided in
discussion with a practitioner, but could be "
very helpful later when you want to go over what has been said
and try to get the whole picture".

When issues had been discussed that were upsetting and emotive
it was natural for people to forget or not take in some details.
This caused misunderstandings between parents and professionals and
upset on all sides. Having written information as a 'back up' would
have given both family and professional a shared point of
reference.

Parents talked about having to find out things for themselves.
Several referred to the Mental Welfare Commission website as
"extremely useful" but said they were "
not signposted to it, more luck than anything".

One parent talked about having fairly regular meetings with the
staff but there being "
unclear agendas, vague outcomes being set with no real
timeframe, we were sent brief minutes but no real actions seemed to
be up for discussion or recorded. We really didn't know what was
supposed to happen next and it never seemed to get any
clearer".

Young people were placed in a range of settings including
pediatric wards, adult
LD wards, secure and
forensic settings,
YPUs and general
hospital wards. One mother whose child was transferred between a
number of these settings said
"I was hardly ever introduced to the setting, what it could
provide or really why we were there. Of course sometimes I knew it
was because nothing else was available". She contrasted this
with a
"time we were taken through the reasons for being admitted by a
doctor and what kind of timeframe she was expected to be there for.
In the midst of all the awfulness that was so helpful to us both.
Everything feels so out of control it was like we could see some
way ahead".

A4.17.4 A non-holistic perspective of the young
person

Parents talked about one aspect of their young person, their
learning disability or a particular behaviour, being addressed
rather than a whole person approach.

The needs of a young person with autism spectrum disorder who
also had an eating disorder were a powerful example. The parent
talked about a management approach being taken which disregarded
the young person's need to know what she was about to eat. The need
to know what was planned and in what order things would happen was
not recognised by the staff. The young person was able to explain
this need and was supported by the parent but both were told that
was
"not how eating disorder is managed here".

Parents reported that their young people with autism spectrum
disorder who could articulate their distress at how they were being
managed were characterised by some staff as being
"attention-seeking".

A4.17.5 A lack of therapeutic input and other
interventions within settings

Parents talked about being surprised at the limited access to
therapy for their young people. Where it was made available parents
had seen it as something positive. One young woman had received
group therapy and worked with an art therapist, "
this really seemed to be helpful, she enjoyed it. When she was
transferred nothing was offered in the new setting, it seems a
shame".

Two parents were told that their young people "
wouldn't benefit from it" but did not feel they were given
an adequate explanation for this statement. One parent said her
child had received 1:1 therapy
"but because he couldn't remember it I was told 'we won't waste
our time', he may not have remembered but I saw a real improvement
in his mood when he was getting that input".

When young people were in any setting for a while parents
reported becoming increasingly concerned as
"to what was happening, other than medication what else was
being done to help them?" A parent said "
after a while I realised he was just being contained, maybe
that is ok for a short while to get over a crisis but eventually a
lack of intervention and interaction just seemed to be making
things worse".